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Old 12-14-2012, 03:11 PM   #1
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At my wit's end with this, any ideas?

Greetings,

I am at my wits end regarding this and no doctor can give me an answer, despite their apparent best efforts at trying. A little history.

I first started taking BP meds in 2005. My averages unmedicated were 140-155/87-100. After taking as little as 10 mg. of Lisinopril, my numbers came down to 120/70. However, due to side effects, I was unable to continue with this drug. Enter Cozaar. 50 mg. combined with 12.5 of HCTZ and my pressures maintained at around 130/80. The pressures were good enough that I stopped taking my BP since it became an obsession.

Fast forward to September 2010, Cozaar starts to lose effectiveness. Began a "ring around the rosie" attempt to find the right combo that would work, and not make me feel horrible.

November 18th 2010 Woke up in the middle of the night and didn't feel well. My pulse was up to 90 (normally always 60-75). I felt kind of hot. I laid down on the sofa for a while and then after an hour or so I sat up. After sitting for a bit and sipping some water, I took my pressure and it was 180/118. I woke my wife up and we went to the hospital. They took blood tests, urine sample, etc. Gave me ativan and told me to call my doctor. Discharged with 150/100.

Next day spent the whole day in bed and checked my pressures laying down. I was getting 135/82 laying on my right side. However, whenever I would sit up, my pressure raised to 160/110. Went to the doctor's and they checked my pressure 3 times in both arms and consistently got 138/92. I'm pretty certain about my monitor since it was new and it matched what I got at the hospital. They told me to double my med and talk to them on Monday.

This was the first spike of that size I had ever had to my knowledge. 4 years earlier when I was in a very high stress period I had a reading of 180/111 for one evening, but it dropped 10 points a day after the stressful period was over, until it returned to "normal" for me.

Late December 2010 had another episode similar to the one just mentioned. Went to the doctor the following day and had 167/107. They told me to try not to worry and stress over it and see if it came down.

Throughout early 2011 I had a difficult time keeping my blood pressure under good control despite trying a variety of medications, including enalapril, diltiazem and others. Starting in the Summer of 2011 I took Benicar (another ARB) with HCTZ (20/12.5) and they kept the numbers somewhat okay. I find that pain medication (Vicodin, Tramadol) has the effect of lowering my pressure a bit as well.

Since Benicar is cost prohibitive, I have switched back to Lisinopril since it worked so well years ago at such a low dose. This I have taken since the Summer of 2012, however, I need to take twice as much plus add HCTZ to even get halfway decent control. To top it off, I still get these weird, out of nowhere BP spikes. When they happen I have a prescription of Diltiazem that I can take (60 mg) which will bring it under better control after a few hours. The problem is, these episodes can last as little as a few hours, to a couple of weeks. So, I will end up taking 30 mg. of Lisinopril, HCTZ and 120 mg. of Diltiazem a day, just to keep at or below 140/90. Then, just as suddenly, the BP switches "off", and my BP tanks, necessitating me to cut the medications back to pre-spike levels. Then, all well for a few weeks, maybe a month or so, then Bam, again.

I was tested for a pheo both through urine as well as CT scan. No pheo. I have had my aldosterone levels checked both seated and standing (apparently this can make a difference), nothing.

I do have what are called “inappropriately normal” PTH levels and intermittentley elevated calcium levels. I also excretee too much calcium in my urine causing my endo to suspect hyperparathyroidism.

I always had a decent diet, but when these spikes first started, I went through a purging period where I discontinued use of anything that remotely could give me a reaction. Nothing changed. Not discontinuance of all caffeine, salt, cheese, etc. did anything at all.

I am at my wit's end with trying to figure this out. I don't feel good in general, but when these spikes happen I really feel like garbage. Any ideas? Commiseration?

Regards, Brenden.

 
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Old 12-19-2012, 01:44 PM   #2
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Re: At my wit's end with this, any ideas?

Hi, just a suggestion. Have you checked your pulse rate along with your BP.
There is something called POTS (Postural Orthostatic Tachychardia).
This is a change in pulse rate and in some people blood pressure with a change in position. Usually the heart rate increases over 30 pts when going from lying to sitting or sitting to standing.
Some peoples bp goes down and they faint, but some peoples bp goes up. My bp goes up and I feel terrible. Seriously, feels like I am having a heart attack or stroking.

I am currently experiencing this and am going thru further testing to try and determine why. I have been checked fro pheo tumor also.

Again, could be something else, but you might look into this. I am also being checked for carcinoid tumor.

 
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Old 12-19-2012, 03:08 PM   #3
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Re: At my wit's end with this, any ideas?

Had your thyroid function tested? TSH and free T4...

How high is your calcium? Elevated calcium can cause hypertension to my knowledge. Is it worse than it has been?

Have other health problems?? How old are you?

 
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Old 12-20-2012, 07:53 PM   #4
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Re: At my wit's end with this, any ideas?

Greetings,

@Stressed: I have had episodes of POTS in the past. Of course, never at a doctor's, but since I have a monitor, I have taken my BP when standing. At times it has been about the same, give or take, as when sitting. Other times it has dropped and I have had my heart rate, which generally runs around 60-70, go up to 110. Other times, I have had my BP jack up 20 points or more just from standing. It really is strange. I like you, do notice when things are out of kilter and people always say you don't notice your BP, but for me that isn't true.

@Atengner: Yes, my thyroid function has been tested, although I don't think I have had the full gamut of thyroid tests. My calcium has been elevated with inapropriately high-normal PTH readings, causing my endo to suspect hyperparathyroidism. However, I did have a blood draw during one of my spike episodes (180/120) and oddly my serum calcium was 9.4, which is lower than it generally runs. I am 47. My health history is documented here pretty extensively: http://www.healthboards.com/boards/lyme-disease/882042-symptoms.html as well as here: http://www.healthboards.com/boards/chronic-fatigue/854353-can-anyone-relate.html

They are fairly lengthy. I am pretty much muddling along one day at a time. Doctors have been (with only a few notible exceptions) of no help and when I find I know more about something than the guy I am paying to see, I become pretty disappointed.

Thanks for the input.

Regards, Brenden.

 
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Old 12-21-2012, 03:28 AM   #5
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Re: At my wit's end with this, any ideas?

Any diseases run in your family?

 
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Old 12-22-2012, 01:46 PM   #6
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Re: At my wit's end with this, any ideas?

Hi Atengnr,

My father had MS. I was checked for that 7 years ago and they said all clear. My mother has HBP and had high readings for who knows how long before she finally started on meds at age 73, she is 82 now. Her father had HBP, and never did anything for it. He died at age 83 in a nursing home. They listed HBP as cause of death. This was in 1972, so given the standards of the time, for his age he must have been running a systolic well in excess of 180 for them to list it as HBP (age plus 100 being the standard then). The winter prior to his death, he shoveled a 100 foot walkway between our house and his that had 2 feet of snow. He was a Swedish lumberjack earlier in life and I remember him as a kid doing chin-ups in the doorway when he was 79. He never took any drugs. Go figure.

Regards, Brenden.

 
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Old 02-09-2013, 01:36 PM   #7
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Re: At my wit's end with this, any ideas?

Greetings,

Just to bump this and also add something. When I have these episodes, I notice that I urinate alot more than usual, whether or not I am taking HCTZ at the time. Not sure what this means, but I figured I would log it anyhow.

Regards, Brenden.

 
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Old 02-09-2013, 01:48 PM   #8
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Re: At my wit's end with this, any ideas?

It really sounds. Like a form of pots or some form of dysautonomia. Your autonomic nervous system is off and cause all sorts of problems.

Last edited by moderator2; 02-09-2013 at 02:41 PM. Reason: please do not post a commercial website for any reason

 
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Old 02-20-2013, 07:56 PM   #9
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Re: At my wit's end with this, any ideas?

Hi. I don't know you very well and only did a rather quick read of your posts, but in my opinion, it seems to be a matter of sticking with what works, such as the Lisinopril. You mentioned you've doubled the initial dosing, to be (20mgs?) this is not a high amount of medicine. 40 mgs would be appropiate for alot of HBP people. I keep thinking you're really into details and your own health and thus this can cause wild fluctuations with your BP. When you mentioned the narcotics helped the BP, this is explained by the CNS depressant that they are. They slow down all your central nervous system which is sometimes called the autonomic or sympathetic, and controls parts of your body you can't voluntarily, such as BP, heart rate, list goes on and on, and also relax muscles very well since they're controlled by nerve signals. Your arteries have a muscular wall to them, that's why they're affected so much by nervous system. I keep thinking for how focused you are, you might try an avenue of anxiety reducing meds. This could help with the consistency in BP with reduced fluctuation swings, and then with supplementing the reduced-anxiety with Lisinopril or similiar. Lisinopril is a good ace inhibitor and helps the dilation of blood vessels, but 20 mgs is not very much. I would think closer to 40 mgs would work fine and stopping the other BP meds of course.

Curious to know, you don't take calcium supplements, do you? Do you get enough Vitamin D to counter calcium flushing out?

Last edited by plb4333; 02-20-2013 at 08:35 PM. Reason: to better word...

 
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Old 02-21-2013, 04:39 PM   #10
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Re: At my wit's end with this, any ideas?

Hi Plb,

Thanks for your input. I'll encapsulate the past seven/eight years as succinctly as possible. At the age of 39 I was bitten by the family dog and I wasn't sure the last time I had a tetanus shot, so I went to have one. While there, they said my BP was high and I should think about meds. I decided to get my own monitor to see if I was consistently high or just had anxiety/white coat type. I took my readings every day for a month and consistently got 140-150/90-100. Let me add that at this time I felt fine, I had no particular complaints. I decided it was time to have a physical and went in February of that year to have one. Doctor put me on Lisinopril 10 mg. This drug was so effective for me that at only 10 mgs for less than a week, my pressures fell to a consistent 120/70 reading on average. However, I developed some severe left abdominal pain, but was negative for pancreatitis, which is the only known side effect of this med involving that complaint. I switched to HCTZ which did little but worsen my PVC’s. We then tried Cozaar with HCTZ and this seemed to do the trick without any real side effects. I was able to achieve consistent 130/80 readings and figured, okay. Le me add that I never really wanted to start the drugs and tried a variety of lifestyle changes to see if I could come off of them. After a while it seemed that I needed to keep taking them.

Shortly after this, I developed a recurrence of tinnitus and vertigo that I had had in 1997, this was my genesis in coming to Healthboards. I started sharing in conversations with people on the Inner Ear boards. I'll fast forward.

After 5 years I accepted my tinnitus/vertigo and tried to enjoy my life as much as possible, despite feeling that my IQ fell from 140 to about 85. Around August of 2010 I had an episode where I felt very strange. I noticed myself feeling very hot. I felt uncomfortable and that something just wasn't right. I laid on the bed for a little while and decided to take my pressure since I hadn't done so for over a year. I figured, my readings were staying consistent, why obsess. My BP was 165/105. I made an appointment with the doctor to discuss it. We doubled the Cozaar to 100 mg and increased HCTZ to 25 mg. Nothing. Pressures kept rising. Switched to diltiazem. Worked a little, but gave me headaches and made me very sluggish. Tried Enalapril. Nothing. I figured I would just keep taking my meds and hope for the best.

November of 2010. Had another one of those strange episodes in the middle of the night while sleeping. No nightmares. Nothing that would have triggered it. Laid on the sofa for a while and finally decided to take my BP. 180/120. Off to the ER. They basically were of no help. Saw my regular doctor. She thought maybe it was an anomaly. Next month in December, same thing. Guy in the ER gave me clonadine. Brought my BP down to 140/90. Then, a few hours later, it dropped to 105/65; when I stood up I nearly passed out. Obviously, the clonadine was working, but whatever caused the spike also resolved so my pressure went in the tank. I was tested for a pheo. Negative. Had my aldosterone levels and all the other crap checked. All negative.

This has continued to be the case. I may go a week or a month with decent numbers. But then, it will spike up and it may stay there for a day, or a week and then the switch will turn “off” and my pressure will drop. Something's messed up. Around this same time I developed a weird problem. I had been a regular drinker for years. I noticed muscle pain and soreness within 10 to 15 minutes after drinking even a single beer or glass of wine. It's a unique and obvious pain and no one seems to no what it is. I quit drinking. Still happens when I test it out from time to time.

Whatever the case, from age 39 to age 45 I have gone from feeling my age to feeling 70. I finally got all my papers together and reviewed them myself. Discovered that getting an elevated calcium reading wasn't uncommon for me. Asked my doctor about hyperparathyroidism. I have almost every physical symptom of this. Took PTH and ionized calcium. High IC levels, borderline high PTH. Saw an endo. Same results with a high 24 urine calcium. Low vitamin D, which according to parathyroid specialists, is not uncommon in people with hyperparathyroidism. The theory is that the body tries to keep D levels low to prevent serum calcium from going high. This, coupled with the urine calcium output is a “coping” mechanism. You essentially "pee" away your bones. My thoracic spine hurts and burns constantly.

Am i too tuned in to my body? Probably. Do I feel like crap? DEFINATELY. Am I tired of doctors saying it's all in your head? You don't want me to answer that. I don't want my widow to find out what the problem was after autopsy.

So, to answer your queries; I would love to stick with a med that works and accept the results. However, it's a bit more complicated than that. I shouldn't feel like this at 47, heck, I shouldn't feel like this at 67.

Regards, Brenden.

 
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Old 02-21-2013, 07:03 PM   #11
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Re: At my wit's end with this, any ideas?

Quote:
Originally Posted by Exegesis View Post
Hi Plb,

Thanks for your input. I'll encapsulate the past seven/eight years as succinctly as possible. At the age of 39 I was bitten by the family dog and I wasn't sure the last time I had a tetanus shot, so I went to have one. While there, they said my BP was high and I should think about meds. I decided to get my own monitor to see if I was consistently high or just had anxiety/white coat type. I took my readings every day for a month and consistently got 140-150/90-100. Let me add that at this time I felt fine, I had no particular complaints. I decided it was time to have a physical and went in February of that year to have one. Doctor put me on Lisinopril 10 mg. This drug was so effective for me that at only 10 mgs for less than a week, my pressures fell to a consistent 120/70 reading on average. However, I developed some severe left abdominal pain, but was negative for pancreatitis, which is the only known side effect of this med involving that complaint. I switched to HCTZ which did little but worsen my PVC’s. We then tried Cozaar with HCTZ and this seemed to do the trick without any real side effects. I was able to achieve consistent 130/80 readings and figured, okay. Le me add that I never really wanted to start the drugs and tried a variety of lifestyle changes to see if I could come off of them. After a while it seemed that I needed to keep taking them.

Shortly after this, I developed a recurrence of tinnitus and vertigo that I had had in 1997, this was my genesis in coming to Healthboards. I started sharing in conversations with people on the Inner Ear boards. I'll fast forward.

After 5 years I accepted my tinnitus/vertigo and tried to enjoy my life as much as possible, despite feeling that my IQ fell from 140 to about 85. Around August of 2010 I had an episode where I felt very strange. I noticed myself feeling very hot. I felt uncomfortable and that something just wasn't right. I laid on the bed for a little while and decided to take my pressure since I hadn't done so for over a year. I figured, my readings were staying consistent, why obsess. My BP was 165/105. I made an appointment with the doctor to discuss it. We doubled the Cozaar to 100 mg and increased HCTZ to 25 mg. Nothing. Pressures kept rising. Switched to diltiazem. Worked a little, but gave me headaches and made me very sluggish. Tried Enalapril. Nothing. I figured I would just keep taking my meds and hope for the best.

November of 2010. Had another one of those strange episodes in the middle of the night while sleeping. No nightmares. Nothing that would have triggered it. Laid on the sofa for a while and finally decided to take my BP. 180/120. Off to the ER. They basically were of no help. Saw my regular doctor. She thought maybe it was an anomaly. Next month in December, same thing. Guy in the ER gave me clonadine. Brought my BP down to 140/90. Then, a few hours later, it dropped to 105/65; when I stood up I nearly passed out. Obviously, the clonadine was working, but whatever caused the spike also resolved so my pressure went in the tank. I was tested for a pheo. Negative. Had my aldosterone levels and all the other crap checked. All negative.

This has continued to be the case. I may go a week or a month with decent numbers. But then, it will spike up and it may stay there for a day, or a week and then the switch will turn “off” and my pressure will drop. Something's messed up. Around this same time I developed a weird problem. I had been a regular drinker for years. I noticed muscle pain and soreness within 10 to 15 minutes after drinking even a single beer or glass of wine. It's a unique and obvious pain and no one seems to no what it is. I quit drinking. Still happens when I test it out from time to time.

Whatever the case, from age 39 to age 45 I have gone from feeling my age to feeling 70. I finally got all my papers together and reviewed them myself. Discovered that getting an elevated calcium reading wasn't uncommon for me. Asked my doctor about hyperparathyroidism. I have almost every physical symptom of this. Took PTH and ionized calcium. High IC levels, borderline high PTH. Saw an endo. Same results with a high 24 urine calcium. Low vitamin D, which according to parathyroid specialists, is not uncommon in people with hyperparathyroidism. The theory is that the body tries to keep D levels low to prevent serum calcium from going high. This, coupled with the urine calcium output is a “coping” mechanism. You essentially "pee" away your bones. My thoracic spine hurts and burns constantly.

Am i too tuned in to my body? Probably. Do I feel like crap? DEFINATELY. Am I tired of doctors saying it's all in your head? You don't want me to answer that. I don't want my widow to find out what the problem was after autopsy.

So, to answer your queries; I would love to stick with a med that works and accept the results. However, it's a bit more complicated than that. I shouldn't feel like this at 47, heck, I shouldn't feel like this at 67.

Regards, Brenden.
Thanks for your response and if does give me a better picture of what's going on. I feel for you, as I have somewhat similiar circumstances. So it sounds like you definitely have hyperparathyroidism? or no? and you continue to take meds for it? Have you ever been checked for vascular problems? such as possibly vascular spasms? or vascular peripheral disease? Do you take supplements of any kind? I doubt this, but have to ask anyway, do you have anxiety alot, even without your medical complications? Let me know of anything that might be pertinent and I'll most likely help you out a bit

 
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Old 02-21-2013, 08:01 PM   #12
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Re: At my wit's end with this, any ideas?

Your onset of pain [shortly after alcohol consumption] might be caused by dehydration, possibly. Do you drink plenty of liquids, especially plain water or sports type drinks, this could help immensely for getting rid of muscle pain caused by dehydration. If you still have Tinnitus, a good remedy for that and also OTC, is diphenhydramine. Such as Benadryl or similiar. This goes a long ways for those with Tinnitus and sometimes vertigo associated with it. Normally, a Dr. will prescribeMeclizine, but this is virtually identical in chemical composition. Try the extra fluids and antihistamine properties of diphenhydramine and I think you'll be impressed with the lessening pain and tinnitus symptoms. If you drank for many years and caused some stomach erosion, its possible your vagus nerve is causing your tinnitus/vertigo after those years. Its a very long nerve from the abdominal region to your brain and close to the ear region. Do you have stomach issues now? How about GERD or frequent acid burping or stomach pain, even slightly?
HCTZ really isn't recommended for those with hyperparathyroidism. Also, take closer to normal doses of calcium and D3, not huge amounts as this won't help you believe it or not. Especially too much Vitamin D. I know, I know its supposed to counter the calcium loss, but too much can be counter-productive in this disease. Have you had a bone scan for density? checked for tumors? Do the Dr.'s believe it might be primary or secondary in nature? How about kidney stones, have you been checked for that, as well as kidney disease and having your creatinine checked as well.

Last edited by plb4333; 02-21-2013 at 08:25 PM. Reason: added info

 
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Old 02-24-2013, 02:29 PM   #13
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Re: At my wit's end with this, any ideas?

Hi PLB,

To answer in order:

1. Yes, I drink enough liquids. My hydration patterns haven't changed, and the pain comes whether I am currently taking HCTZ or not.

2. I have taken Meclazine, prescription strength and it never helped.

3. I had an endoscopy 3 years ago, and aside from a few benign polyps, nothing was found. I had this done before the pain started, however, my drinking was heavier prior to the endoscopy and was stopped after. I have also been treated with PPI's "just in case". No improvements.

4. I do not take calcium supplements. I have been reluctant to start the Vitamin D3 treatments my endo sugggested due to a low vitamin D reading, since I have read that Vitamn D depletion has been theorized to be an internal mechanism the body uses to avoid calcium absorption if you are hypercalcemic.

5. I had a heel dexa scan 4 years ago. At that time my reading was -2.0 at age 43.

6. I was checked for a pheo via CT Scan 3 years ago January. Negative.

7. Doctor is unsure whether primary or secondary. From the reading I have done, secondary seems unlikely.

8. Just did a 24 hour urine for creatnine and meta someting and cata something. Waiting to hear back.

9. Haven't had any stones yet that I am aware of. I hope I don't.

10. Don't take supplements at the moment.

11. Yes, I am anxious before all this started and much more so now.

12. My Vitamin B6 levels were slightly high, by one point, so the doctor said to avoid B supplemets. B-12 is spot in the middle of normal.

13. Testosterone is a lttle lower than the middle, I can't remember. She said it's not great but not close enough to low to be a concern. All of my other blood work has always been fine.

14. Had 2 stress echos. One 5 years ago and one 2 1/2 years ago, right after my first 180/120. First one, tech thought he saw mild LVH. Second time, tech said no LVH just that the left was at the upper end of normal ranges. I guess I performed "okay" for a guy of my age that isn't a jogger.

15. I've also had a pulmonary test which showed good lung performance overalll, but one of the measurments was a little low, but not significant.

Hopefully this isn't excessive. There's more I could add, but this is already more than anyone cares to know.

Regards, Brenden.

Last edited by Exegesis; 02-24-2013 at 02:30 PM.

 
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